Explaining MS to others

I find it so hard to explain to others just how one feels with MS. No one really understands unless they have been there. I would be interested in how others explain their symptoms to others. My biggest hurdle is trying to make my husband understand why I walk so slow, why I get confused, why I tire easily, why I get dizzy. This is how I tried to explain the leg weakness: Have you ever performed an athletic event that gave you an adrenaline high, only to have your legs feel like rubber afterward? Well, with MS, that is pretty much how your legs feel most of the time. However, it can vary from day to day or even from minute to minute. Just when you feel strong enough to take on the world, your legs suddenly become so weak, you aren’t sure you can take another step.I am a positive person, but at times one does get down in the dumps when they have trouble explaining why they can’t do something. To many people, if you look o.k., you must be o.k. I have never felt normal, since I was diagnosed—–I feel like I am in a “fog” most of the time. How do others cope with explaining MS to family and friends?

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Comments

Explaning what we feel isnt always easy. I have 2 issues with my MS, balance and fatigue. My balance is garbage, there’s no getting around that one but its easy to say. The fatigue however was a little harder to explain but this may help. I may sleep as much or more than the next person, but I don’t get much rest when I sleep so I wake up just as tired as when I went to bed. Think of an old warn out rechargable battery that doesn’t charge all the way up anymore despite being plugged in all night. Like an older cell phone that only lasts a few hours instead of all day like it used to. People usually understand that one.

Sometimes my legs feel like I am trudging in water. Sometimes my legs are numb. Sometimes my legs cold and heavy. Sometimes my legs are achy. Sometimes the nerves in my feet are touchy and jumping. Sometimes they feel like they are dead. But one thing they are never, is normal like when I was young.

In the heat and humidity of a early Florida morning yesterday, I walked my dog for longer time than I should have. My husband was watching me walk back and made an observation that I was really walking fast. I remarked being tired and hot is a great motivator. He told me I needed to get into the pool. I instead just collapsed on the couch. I then told him the truth of the matter. I had no energy left to remove my shoes and clothes to get into the pool. “It’s like a plug is pulled and the energy is cut off.”

I was trying to explain the fatigue to a friend of mine the other day. I said “imagine you pulled an all-nighter, then ran a marathon, and then started your day.” I’ve also heard it explained like fatigue in pregnancy. A different friend was explaining how she felt during her third trimester and her description was “at about 2:00 every afternoon it’s like I just get hit with a brick wall. I can barely stay awake, I don’t want to move, I just feel spent.” I was thinking, yeah that’s pretty much MS fatigue, except often it’s all day long. You wake up feeling that way and it just doesn’t go away.

Fatigue is the biggest issue I deal with so it’s what I have the most experience trying to explain.

Since almost everyone these days can relate to the internet world, I use an IT (industry term – Information Technology) analogy and a little bit about how it affects me. I’m lucky that I have minimal hardcore pain but definitely lots of sensations and spasticity. Here is a note that I occasionally send to new friends and colleagues, I hope it helps!
****
What is MS? If you think about IT/network communications, e.g., the internet, it is like the data packets being sent to another IP address are missing or have incorrect header information. So they are incorrectly reassembled or not received at the destination IP address. The impact manifests itself in things like latency (garbled voice communications) or the handshake does not complete (the page simply won’t load.)

I am like a wind-up toy and sometimes it’s raining – or what this means for me:

I was really uncomfortable when I first started using a cane. My hubby told me to think of it like we use umbrellas. Sometimes we just carry them because rain is predicted. Sometimes we have to use them the whole day!
Now that I’m using a cane about 90% of the time, I can spend time feeling silly about using my Rollator – my fancy-dancy walker with wheels, hand brakes and a seat with storage!

Daily, I’m like a wind-up toy, I only have x number of steps and then I become slow and spastic…looking rather like I’ve been hitting the sauce too much!

Weather plays games with me – warm and humid I get very spastic, wicked cold – I just slow down like the oil in Siberian car engines.

Sometimes I might look like it hurts when I move, but I am in NO pain – I just look kinda funny. Sometimes I might kinda tip over or falter when I’m “walking” and need to hold on to something like your elbow! Sometimes I end up zig-zagging like a drunk. I just think of those as “extra steps” on the pedometer!